Julie and Steve's Diary
Most recent entries are at the top.


For continuing entries, go to "Steve's Survivor Diary"

5:50 pm

I was visiting with some neighbors who stopped by to wish us well when Dana called me to Julie's side. Her breathing, which had become more and more labored all afternoon, had slowed suddenly. I leaned down so my ear was right next to Julie's mouth. That's when I heard her let out her last breath. My sweet wife was healed at last.

Within moments, friends and family gathered around. We had some time alone in the room before the hospice nurse arrived to make it official. The folks from the mortuary arrived not long after. It was difficult to see her being taken away, but we knew that what left our house in a van wasn't Julie. She was in Jesus' arms at last.

Friends stayed with us for a while, then it was time to go to sleep. Wendy return to her APU apartment where some caring people were waiting to embrace her. Holly and I bunked in together last night and talked quiety until we both dropped off.


We've been surprised before as Julie bounced back from what we thought would be the end. However, it's starting to look like the time is close at hand. She has been unresponsive all day, hasn't had water since yesterday morning, and seems to be in more and more discomfort. As that happens, we have responded with the help of the hospice people to keep her medicated and comfortable. As of now (5:10pm), her breathing is becoming more labored (like a fish out of water) and breaths are coming less frequently.


Last night was hard... again. Julie was semi-awake and restless about every 30-60 minutes from about 3:30 on. She'd ask to be turned one way and then the next. Since she's only giving us short words and phrases, it's very hard to figure out what she wants. Her instructions don't always make sense. After a good deal of trial and error, I'd manage to move her to a comfortable position and settle her down to sleep. Within an hour, she'd be contorted into some strange position asking to be moved again. I gave her the medication the hospice nurse recommended, but it didn't seem to help very much.

By 7:30, I was pretty close to losing it. I was exhausted, frustrated and angry. It wasn't Julie's fault—or anyone's fault—but I was ready to climb the walls. Then, Julie asked for a bath. At that point, I woke Wendy and asked for her help.

The stress is starting to get to all of us. Wendy and Holly were getting on each other's nerves more than they usually do.

Friends have offered help and family is rallying. Dana has arrived and will be spending the night with Julie so I can get what I hope will be my first full night's sleep in over two weeks. Starting tomorrow, we'll be taking turns sitting with Julie so I can go back to work.

In the meantime, Julie is continuing to slip. She refused juice today and hasn't had much water. She could barely manage drinking through a straw. We have been moistening her mouth with swabs and giving her water through a dropper. The few times she woke up, she wasn't completely awake. Her eyes only opened for moments. —S


Julie's awake time continues to diminish. Today's total is less than an hour spread throughout the day. Even when she's with us, her eyes hardly open. She only has a few sentences for us; mostly, she communicates in single words or very short phrases.

Because we're seeing the beginning of possible bed sores, we had a hospital bed and air mattress delivered today. Even while we were transferring her, she barely stirred. From now on, we need to turn her over every two hours to keep new sores from developing.

Holly and Wendy spent last night with friends so I had the house (and Julie's care) to myself. I've only been doing this job full-time for a few days and I've already gained a new understanding of why Julie never had time to sit down—and that was without the caregiving responsibilities. In between Julie's water and juice breaks and turning her over, I worked on cleaning the kitchen and sorting out what's in the cupboards. When I finally went to bed at 1:30, I wasn't done. I started again when I got up at 8:00.

I know what you're thinking. Why didn't I call and ask for help? The truth is, I needed to do this. I feel like I need to get a handle on how this house operates. I'm finding things in cupboards and cabinets that I never knew we had. I'm trying to get things organized enough to know what I'm up against, hoping that I can find my way to some kind of sustainable routine. I'm not there yet, but I made a little progress.

Since Julie can't be left alone, we had to make arrangements to get Holly to and from school. It wound up being a little easier than I expected. Our neighbor across the street (who has been cooking the most delicious oriental means for us) will come over in the mornings while I'm on the road. She's a nurse, so she's especially helpful. In the afternoons, Julie's father will pick her up at the school and bring her home. This will give Holly some building time with her Papa Mick, so that's a good thing.

As for work, I'll continue to do most of it at home. But I am going to need to be at the office and out on location more. We'll work on covering those times as they come up. —S


As far as Julie's condition is concerned, today was completely status quo. But for the rest of what we're calling "life" right now, today was retooling day. Since it now looks like we'll be in this holding pattern for some time to come, I felt the need to adjust our game plan and settle in for the long haul.

I talked with Val about going home. Even though she had mixed feelings about leaving, we agreed that it was for the best. I took her to the airport at 3:30 and she was off. I can't even imagine what we would have done without her. She was a rock for us even though she's losing her best friend. You just don't find this level of love and self-sacrifice very often.

We also have made arrangements to get Holly to and from school every day while making sure someone is always here to watch over Julie. As simple as it seems, that was the biggest logistical obstacle I've faced yet. Dana (Julie's sister) will be here with us most days, but Holly and I are working on dividing up chores as we start adjsuting to what life is going to be like around here. I'm also trying to spend more time working. Oh yeah, I guess I'll still have to make a living.

Right now, I've got my computer in the bedroom so I can write and watch Julie at the same time. She's deep asleep, but has a sweet smile across her face as she so often does. Ok, time to get back to work. More later. —S


After such a steep and rapid decline in Julie's condition over the past 10 days, we're amazed to see her continue to hang in there. Did I sound the alarm too early? All of us—Julie included—thought we had only days or hours left. Our hospice nurse came in today after a day off and fully expected to find that Julie had passed away. Not so. As with everything else, she is doing this her own way. Her vital signs are consistent, she continues to drink water and fruit juice, and her kidneys (though compromised) continue to function. She wakes up only occasionally, but seems to be aware of what's going on around her at all times. The latest word is that the progression of the disease could take her at any moment or she could continue to hold on for weeks. That's a pretty wide range of possibilities.

Every time Julie says a coherent word or smiles or takes nourishment, I continue to pray that God will give us the miracle we've been praying for. But if that's not his plan (and I can't understand why it wouldn't be!), why are we trapped here in limbo land? Despite the pain of waiting, I'm still thankful that Julie hasn't had anything more than mild discomfort. Even when she's in her deepest sleep, I frequently find a broad smile across her face when I go in to check on her.

How do I feel about the possibility of this long lingering process? Numb. I'm a bit more functional than I was a few days ago. I watched part of a show on TV last night. I feel the urge to get some work done and relate with people about something other than death. Still, we're stuck in this bubble.

At noon time, I went on a couple of work errands including a trip to the print shop to sign off on some proofs. On the way back, I saw an SUV swerve wildly in the oncoming lane. With glass flying everywhere, it went up a steep embankment on the roadside, swung back into the street, bounced off the median, then rolled back up the embankment where it came to a stop. Nobody got out. I stopped quickly and jumped out of my car. While calling 911 with my left hand, I reached in with my right hand to help the 60-something lady behind the wheel. She was conscious, but bleeding lightly from several glass cuts on her arms and hands. I led her to the curb and helped her sit down. Police and paramedics arrived within two minutes. The officer told me I could leave. As I drove away, I couldn't help thinking, "That's what I need—more drama in my life!" But it did feel good to help someone else after being so tenderly cared for by so many people over the last couple of weeks.

It's off to bed now. More tomorrow. —S


It's been another long day, but there has been no change in Julie's condition. She has slept for all but about an hour of the day. She continues to be in no pain.

Our friend Val (who has been staying with us since the beginning) wrote these lines for me: "God is in control. His spirit is present in this place and we have been witness to God’s communion with Julie. She is the participant; we are just observers. Julie has chosen life! That life is the Lord Jesus Christ, for He is the Way, the Truth and the Life. We are privileged to attend to her, love her, pray and worship with her as her time with Jesus grows sweeter each day. The smile on her face is almost constant. Our family has been overwhelmingly blessed by all the prayers, love, meals, cards and support from church, neighbors, family and friends."

As the time gets shorter, it has been harder and harder to keep my mind focused. So many thoughts are swirling around. Even well-meaning comments made to me by caring friends have been used by the enemy to sow doubt about the quality of my commitment to my wife and my faith. Though failings and flaws abound in me, I know who I am in Christ. Even so, it has been a challenge to maintain my spiritual equilibrium. I went back to something I wrote a couple of months ago. It was a letter to a friend about what I believe. Even though it seems a little dated in light of the events of the past two weeks, it helped me to read it again. Maybe it will help you, too. I edited out some of the personal comments, but you can read the rest by clicking here.


Sorry that I haven't posted yet today. I'm amazed at how fast the day is passing.

Julie woke up this morning at about 8:45 and announced that it was time. "I'm ready to die now," she told us. She had me get our friend Kevin Mannoia on the phone so she could give him some last-minute input for her memorial service. We brought Holly home from school just in time for Julie to share some parting words. For several family members, she wanted us to let them know "where their value comes from." She talked about the peace and joy that she felt inside and her absolute confidence in her new life. She mentioned that she was "pointing toward the east" (a reference to a scene from the end of C.S. Lewis' Voyage of the Dawn Treader). Then, she said "I love you all. It's been a hoot! Good night, friends. Here comes Jesus." We expected her to heave a sigh at this moment and breathe her last, but that's not what happened.

Since that time, she's been sleeping almost contantly. Periodically, she'll wake up and say things like, "I wonder why I'm still here" and "I want my mind to shut off and my heart to stop beating, but they won't." She's clearly ready to go, but her wonderful body (which she always told us was perfectly healthy except for the cancer) doesn't seem ready to shut down. As you can imagine, it's incredibly hard to go through this phase. The nurse told us that although she could go at any moment, it's possible that Julie could hang on for a week or more. As hard as it is to say, I'm praying that God will either heal her (oh, please!) or take her home. —S


8:00am At about 1:30 this morning, Julie became restless and kept trying to get out of bed. "There's so much I have to do," she said. I tried soothing her and telling her that all her chores were done. At one point I sat her up so I could rub her back. Suddenly, she stood bolt upright. I held her for a moment and tried to get her to lay down. She wouldn't turn in the right direction. After repeated attempts, I finally had to pick her up and put her into bed. Not an easy chore--even for someone in prime physical condition like me. :-) This continued through the night until Wendy came in at about 7:00am. I went to sleep in Wendy's room until 8:30, when Wendy woke me up because Julie kept wiggling around in bed. I called the hospice number, and they had me give her a pill to settle her down. It wasn't a real heavy dose... Julie continues to be without pain.

10:00am The hospice nurse told us this may happen. Julie had what is called a "surge of energy" or a "rally." She was completely awake and lucid. The girls and I were able to talk with her, tell stories and sing songs. We read her the kind letters and cards so many of you have sent. We passed along your hugs and good-byes. Then I looked up and noticed that her eyes were drooping. That was it. She was drifting back to sleep. She barely stirred when the nurse came to examine her. Her breathing is growing shallow, her heart rate is elevated and even though she has a slight fever, her extremities feel cool to the touch. We're keeping things calm and quiet around the house today. We keep giving up trying to project a timeline, but it seems like the time is really short now.

3:00pm Julie's rally continues.. off and on. She has awakened several times. Sometimes she's completely clear-headed and full of humor... other times she's a little disoriented and intent on sliding out of bed. It's just family today, and her father, sister, nephew and sister-in-law have each been able to have some good time with her.

11:00pm Julie has been sleeping hard since late this afternoon. It has been a sweet day full of precious memories. As for tomorrow, it's in God's hands. --S

Julie has an awake moment with the girls.


8:00am I've been watching Julie breathe since about 4:30 this morning. So far, she hasn't budged and we haven't been able to wake her up. She stirs ever so slightly and tries to mouth some words, but her eyes are closed and she's not responsive. The nurse is here to bathe her now.

12:30pm Julie was almost unresponsive during her bath. She did manage to tell us that she is having no pain. At one point, she reached forward and I was able to sit her up. She leaned against me as I stroked her hair and massaged her back. She was able to have some ice chips to cool her mouth and give her some water. The only time she opened her eyes was at about 10:00 when she looked right at me and said, "It's time." I asked, "Time for what?" "Truth," she said. I asked her what truth she was talking about, but she drifted back off. She hasn't said anything since.

4:30pm I took a little nap with Julie. When I woke up, her eyes were open. She wasn't focusing, but she was aware I was there. I came out to give the others family members a few minutes to sit with her. The hospice nurse says the time could be very short now.

12:00 pm

The most amazing thing happened as we were giving Julie a bite of food. She said she felt crowded and we thought we were pressing in too close and cutting off the air circulation. Yet, even after we backed off, she said "it's just so big... there are so many..." We knew at that point that she was seeing something that we were not. Then, out of nowhere, she started to laugh. She told us that Jesus was making her laugh. I've known about the phenomenon called "holy laughter," but I've never seen anything like this. It went on for well over ten minutes. (You need to know that since she has had no real pain, Julie has had no medication. So this is not some drug-induced euphoria.) Finally, it occurred to me to grab the video camera. She continued for several more minutes, some of which I've cut together for you to see. (Click here to see the video)

I can't tell you how this blessed me. Frankly, last night I thought I'd had it. I was totally empty, face down on the ground, totally hopeless, helpless and agonizingly sad. I fell into bed next to Julie and could barely look at her without sobbing. I woke up this morning a bit more rested, but not much better emotionally. The spiritual moments which have occurred today have made a real difference for me. Julie has been talking to Jesus all day. She's been sleeping most of the time, but even when she's sleeping, she has a smile on her face. —S

Jesus maks Julie laugh.

9:00 am

We experienced yet another sacred moment this morning. My sweet Julie was awake and trying to get her body comfortable in the bed. She seemed to be struggling a bit to find just the right position, but with the help of Wendy and Val we were able to get her settled.

Then it began, “What if I don’t want to do this?” The question caught us by surprise. She then shared that she was not sure what to do – should she keep pulling? Did we want her to keep pulling? She told us that she is trying to be obedient and wants to do the right thing. As we continued to reassure her that Jesus would help her to know what is right, Val was led to Deuteronomy 30:11-20. This passage ends with these familiar words:

“Now choose life, so that you and your children may live and that you may love the Lord your God, listen to his voice and hold fast to him. For the Lord is your life, and he will give you many years in the land he swore to give to your fathers, Abraham, Isaac and Jacob.”

As we prayed, Julie appeared to become more and more peaceful and is now resting comfortably. We still firmly believe that God has the power to heal Julie, but only he knows what the future holds. We are all holding firmly to him for direction, comfort and strength. --Kelly Roth (a very dear friend who's more like family. Thanks, Kelly, for putting this into words for me. --S)


Julie has settled down to sleep for the night, so this is the first chance I've had to sit down and let you know what's going on.

My sweet wife woke up at 5:00 this morning. She was coherent and ready to talk. The girls heard our voices (okay, I had to roust Holly out of bed!) but they came down the hall to hear what she had to say. Wendy said, "it was like having my mommy back." The girls each got to spend some one-on-one time and hear from Julie's heart.

She's almost more into the next world than this one sometimes. She told me this morning that she can see Jesus' face and went on to describe in detail His warm, gentle brown eyes and downey-soft robe. Another time, she told me she felt like she was being massaged, "just like the baseball player in 'Angels in the Outfield,' she told me. "Only I was being held up gently." Another time, she said, "I can't understand why I'm still here. I'm ready."

The hospice nurse and social worker dropped by this morning as well. They are so caring and encouraging. Sue (our nurse and case coordinator) did tell me, though, that she's seeing signs that Julie's kidneys are starting to shut down. She tells me that one by one, the organs of her body will begin to close up shop. It won't be much longer now unless God miraculously intervenes—and He certainly still can! As our friend Kathy Mannoia said, "After all, He raised the dead!"

Among the friends that have called or stopped by, we were honored to get a call this afternoon from Dr. James Dobson (my former boss). He was blessed by Julie's testmony and her confidence in the eternity ahead of her. We were blessed by his compassion and concern. Dr. Dobson's influence gave us the confidence to become parents (which we weren't sure about beforehand) and his trust gave me ministry and career opportunities I never could have had anywhere else. I owe him so much! I can tell you from experience that he is absolutely, undeniably, undoubtedly the real thing.

By early afternoon, it was clear Julie was losing energy. She's been so blessed to see everybody who's dropped by (when she's awake), but her capacity for visitors is starting to diminish. Our door is still open and we'd love to have you stop by, but we'll have to ask for your understanding if Julie isn't up to seeing you. It isn't lack of love; just lack of energy.

Speaking of energy, I was surprised when Julie wanted to get out of bed and sit up at the table to eat some dinner. She was able to walk back and forth with some help, but quickly faded once we got her back into bed. I'm going to go in now and curl up next to her.

I've got some sweet moments on video that I'll try to share with you tomorrow. Be sure to check back. Thanks so much for your love and concern. —S







to watch the video of our worship party with Julie.

Today was a long but good day. Several people came over to visit. To be honest, I wasn't sure at first if it was a good idea. Julie started the day very disconnected mentally. She could barely put a sentence together. She'd start to say something, then suddenly stop talking and just stare into space. She told us later that her mind was active and eager to communicate, but she just couldn't get her body to work. But, when our friend Susan Minne came into the room, Julie brightened and greeted her by name. Later, as more people came, her eyes began to sparkle and she had a smile across her face. Weak and tired, yes, but smiling!

Kathy and Kami brought in lunch for everybody and then promised to bring Vince's Spaghetti for dinner (for you out-of-towners, that's local talk for great eating!)

After the spaghetti, we gathered in the back room around Julie's bed and sang worship songs. Steve Fitch served the group communion. It was incredible. My good buddy Tyler Roth (a talented young man; we'll all be working for him someday!) took my video camera and recorded the event for me. It'll be a real treasure for us in years to come, Tyler. Thanks so much. I quickly cut together a few disjointed snippets to give you a taste of the evening. If you have a connection that'll support 256k video, click here to watch it.

Friends, you made us feel so loved. We're humbled by your caring and moved by your willingness to put your busy lives on hold for us. You ministered to us more deeply than you'll ever know. I know God was smiling as much as Julie was!

One more thing--the hospice nurses came this morning and met Julie. They'll be coming three times a week to help out. What great people. —S

Julie responds to worship

Today was quite a day. I woke up to find Julie awake and looking into my eyes. She didn't get up right away, but eventually managed to make it to the kitchen for some breakfast. She stayed awake for a while because she wanted Wendy to help her go through her jewelery box and some other belongings. At Julie's direction, Wendy put the various items into bags marked with the names of family members and friends. Yesterday, she did the same thing with her purse and wallet. This was very painful to watch. Every item had a memory or story attached. I really lost it when she handed me the guitar pick she always carried with her just in case I ever needed one. If you don't know Julie very well, that tells you a lot about her personality.

There was a family BBQ planned at the home of Julie's cousin in Lake Elsinore. I didn't think it was a good idea to try to go, but Julie insisted. So, with the help of her visiting cousin Cinda (Julie has a lot of cousins), we got her up, bathed, dressed and ready. She was alert enough to greet everybody when we got there, but very quickly faded and had to go to sleep.

Meanwhile, I drove back up to Ontario Airport to pick up our friend Valerie Thompson who bought a one-way ticket from Idaho and plans to be with us for the duration. She'll be helping us to keep the household running for a while.

When we got back to Elsinore, Julie was just waking up. She managed to have a bite to eat before we had to take her home. She was so spent by this time that my brother-in-law Roger and I had to carry her to the car. Family members lined up to give her hugs and say good-bye. I'll never forget the sight of all of them standing in the driveway as we pulled out. A very tender and touching moment.

Back at home, Julie felt good enough to get into the house somewhat on her own steam. We put her right to bed.

She woke up about 9:30 and said she needed some help. She wasn't completely coherent, but told me that she felt the enemy trying to push in and wanted help pulling her back. Holly was already in bed, but I called Wendy and Val into the room and we went into prayer. It's amazing how the prayer made Julie feel instantly better. So we had an impromptu worship service. We sang songs and prayed until midnight when Julie said she felt totally at peace and that we had "rescued" her.

I thought that would be it for the night, but I woke up about 2:30 to find her standing next the the dresser with a pen in hand, trying to write something. I asked her if she was okay and what she was doing. She told me she was fine, but needed just a moment or two write down some thoughts to share with us in the morning. I kept asking her to come back to bed, but she said she needed just a few more seconds. I thought I'd let her keep at it for short time. Dear Lord, what was I thinking? At that point, I must have dozed off because when I looked at the clock, an hour had passed. Julie was still standing there. I got up, took the pen out of her hand and put her back into bed. On the paper, she had written a handful of words including "Yahweh", "saved" and "alive." It's getting pretty clear that her mind is moving more toward the next world than this one.

The doctor gave Julie 4-6 weeks. Julie feels God will soon call her home much sooner... she doesn't think she has any more than a week. The way she's losing strength and focus each day makes me feel she might be right. We had originally thought about October 2 as a possible date for the birthday party I mentioned yesterday. She told me today that she doesn't think she'll still be here then. "Maybe that would be a good day for the memorial service," she told me.

People have asked how we feel about having visitors. Friends are always welcome, although it's never certain if Julie will be awake. There's really not anything we need right now in terms of practical help, food and such. Please continue to pray. I thought it was hard when I lost my parents, but as tough as that was, it doesn't hold a candle to watching the most precious, loving partner any man could ever hope to have slip away. —S


Julie continues to sleep most of the time... her waking hours are getting fewer and fewer. She's not in any pain, but she gets uncomfortable sometimes from the bloating. She has been eating a regular diet again and, although she enjoys it, it's not making any real difference in her energy level. If she keeps going the way she's going, it's beginning to look like the doctor's 4-6 week timeline may be generous.

I've been trying for the past couple of days to finish some work projects that got backed up over the last week. After some long hours and all-nighters, things are catching up. Now that I have some time to think, I wish I could stop. Just about everything I look at or think of reminds me of Julie's precious place in my heart and in our family. I can't seem to stop crying. When I do, I look at my girls or at Julie's sleeping face and it starts all over again. Oh, God, this hurts. Please make it go away!

Julie wants to have her 50th birthday party early, if there's time. We're working on putting that together. I know a lot of you are out of the area, but it would be a blessing to have you come. Keep checking the site; I'll post the news right away if we're able to make this happen.

A dear friend sent me an e-mail saying that she's standing in faith on our behalf because she knows it's hard for us to do that right now. That is so appreciated. There is nothing more important than prayer right now. As for faith, you need to know that Julie's eyes are fixed on Jesus and she's looking forward to meeting her Savior face to face. She's fond of saying that she has "no pain, no fear and no doubt." As for me, it's hard to see anything on the other side of this experience that looks like victory. But I know that He who promised is faithful and I know that my anchor will hold. The girls are hurting, too, but I'm very proud of the way they're handling this. They're obviously more grown up than I gave them credit for, and their faith is shining through. —S


We took Julie to see her oncologist today. Dr. Bosserman confirmed what we hoped wouldn't happen. Julie's symptoms are all related to her liver, which is growing more and more compromised. The doctor was surprised to see how quickly Julie's liver is degenerating. Her original 3-6 month timeline given to us at the end of July is now looking more like 4-6 weeks.

I had mentioned that there was a possibility of a new clinical trial protocol for which Julie might qualify. Once Dr. Bosserman saw how advanced Julie's condition was, she told us that that trial probably wouldn't do any good at this point. Besides, qualifying for the trial requires near-normal liver function and that ship, it appears, has sailed.

Lots of you have called and offered help of various kinds. I'm so thankful for the outpouring of love. Right now, I really don't know what we're going to do or what we're going to need over the weeks ahead. I'm not afraid to send out an SOS when the time comes, so don't be surprised to hear from me.

For now, Julie's cousin Cinda is here from Pennsylvania. She's been a great help and encouragement. When she leaves, we'll take things a day at a time. Wendy came home from Azusa Pacific tonight and she's planning to take the day off tomorrow. We'll be checking Holly out of school early, too. We felt that some quiet time as a family would be important.

We'll have more updates later. Right now, we just need a little time to let the boat stop rocking.

Just so you know, we haven't lost faith in God's power or willingness to heal. Come, Lord Jesus! —S


Well, here it is Wednesday already, and I’m still dizzy and weak and just want to sleep all day. So, I am! But as I rested, my brain began going crazy with “stress thoughts and dreams,” so as I lay awake, I began to write these diary entries. I decided it was time to commit them, such as they were – warts and all – to our web site, not realizing that Steve had already done a pretty thorough posting. That was a relief so I felt I could be very honest, as he’s already told the naked truth and folks are already responding to it with phone calls and emails. But I thought it important for me to fill in the blanks with my own thoughts, and let Steve post his comments, too. I also realized last night that I could “engage the mechanism,” like Robert Redford in the movie, The Natural, and just block out what my brain was telling me to do so I could focus on what I did want to think about and care about. I feel very schizophrenic, and I realized I could just ask God to help me choose to let those thoughts go. It worked!! And now, I’m choosing to think clearly and allow those unnecessary thoughts to drift away. There’s a song by PFR (Pray For Rain), a favorite group of mine, that’s called, ”Merry-Go-Round.” I realized last night that I had a choice to step off that merry-go-round and stop letting my brain whirl with unwanted thoughts. That was very empowering! So, my head stopped being divided as much, and I was able to sleep and dream normally for once. That was very therapeutic and healing for me. Imagine, having power over your thoughts again. Being a control freak, that was a good thing, yet it was a freedom I really needed. OK – now I’m not beginning to make sense any more. Time for sleep. I’ll be back soon hopefully in just one brain! - J

9/20/05 Tonight, I was so exhausted I just went to bed. But I still needed to eat, and suddenly, there was my wonderful, exhausted husband sitting by my side with my leftover lunch burrito! As I lay on the bed on my back (because I was so dizzy and felt like I’d fall off if I wasn’t pointed away from the edge) he fed me. And it was delicious! Then, he got me a banana and my evening tea and my evening meds, and I told him that would be enough! No crummy sweet potato for me tonight; I was rebellious!! He said he hoped he wasn’t offending me by being so demanding that he do this for me; I surprised him by saying I was digging being cared for by my beloved, who is not a natural-born care giver! And yet, God was giving him direction and patience to do this for me. In the past, he had to care for a bed-ridden mother when he was a teenager, and I know he carries that baggage around as he sees me deteriorate. He so wrestles with dropping everything and staying by my side every minute so we don’t miss anything, and yet he takes care of the house and his work and Holly and our future plans, so he’s really busy every second being so responsible and foresighted. I have always loved that about him that he always takes care of business and will never let our family slide. I’m the detail person while he has always done the long-range planning, and now, with my compromised brain and selfish routine, he’s having to take over the details, too. But he’s doing great, with help of our Holly (who thinks and often behaves like him, so they’re a great team!) It’s such a relief for me to let it all go and know God’s gonna take care of all the details and make everything run smoothly for them in the future, whether I’m here or not. Which, of course, I hope I am!! Steve didn’t have a lot of care of my mom or his dad, as I did, which was a privilege. However, I feel connected with them in their deterioration now and understand some of their apathy about the process and how their bodies just didn’t need to function at the levels they were used to in the past…and they didn’t care. Just like me, “la-la-la-la.” You really ought to be inside this loop; it’s indescribable, very peaceful and soothing. And you’re just kinda tired of the struggle and want to go home to Jesus. I’m excited and at peace about that…and eager to go. And yet, of course, wanna stay; duh!! Life is such a precious gift it’s hard to let go. I’ve seen that part of my purpose in life is to do this cancer experience and journal it and others keep telling me it’s been such an encouragement and privilege to get the “inside scoop” on what it feels and looks like, really. That’s what I’m here for! So cool of God to let me do this and recognize the privilege and process each day. And yet, the allure of heaven is so wonderful, I can’t wait!! I get it!! And I hope I each of you will pursue a personal relationship with Jesus that will give you the peace and confidence to take that step and cross over when it’s your time, even if you’re eager to stick around for what God has for you here. I feel like Reepicheep, the valiant mouse from the Chronicles of Narnia book, “The Voyage of the Dawn Treader.” He knew it was his destiny to go to Aslan’s country, and when the time came, he set off in a rowboat, pointed toward the utter East. They arrived to see the waters filled with lilies, and as Reepicheep cast off, he told them that if his boat sank, he would swim toward the prize. And if his strength gave out, he would sink beneath the waves with his nose pointed toward the East. And he would arrive safely in the arms of Aslan, the great Lion, his Savior, who is also the Lamb. And he would dwell in his country forever. And they saw him crest over a wave and then saw him no more, but knew he had arrived safely and that they would see him there someday, safely where he was headed, when it was their turn to join him in eternity. That’s the testimony I shared with one of my nephews the other day as we cried together over our decision to discontinue conventional treatments and trust for God’s healing. I told him that if the healing didn’t come in this life, as I hoped it would, that it would come in paradise, as promised by our God! What a testimony we can share when we’re at peace with our destiny and God’s timing!!

I had a lot of trouble sleeping last night. I was totally exhausted, and yet my brain just wouldn’t turn off. However, the coolest thing happened. It began to rain, and I just wanted to run out and get drenched in it. However, I did stay in bed and just listened. That was so soothing and healing for me, and I told Steve in the morning that I had felt a shift in my body, somehow and that healing had come to me as I listened to the rain. It just kept coming all night, and because we had a bit of warning this time, I told Steve it would probably be wise to turn off our computer this time so we didn’t get “shocked” like last time! And as I saw and heard the lightning and thunder so nearby, I was glad we took the time to do that! Fortunately, all was well this time in the morning! Hurrah! That sure saved time and stress for us.

Tuesday morning, I went to acupuncture. It’s so relaxing there and I was so exhausted that I fell asleep, as usual, and they let me snore longer than the scheduled time. Unfortunately, that made me late to a lunch date with a CB (cancer buddy), but we actually ended up making it at the same time! I had given her poor directions…sigh! However, we had the coolest possible time because I was dealing with a divided, fuzzy brain again, and I was just straight-up with her about everything. The thing about this weird brain is it’s making me totally honest about my feelings, and I don’t care how weak and affected I act and look, no matter where I am. Even out in public, which I certainly was that day! I noticed the people in the restaurant tuning in to our conversation a lot; I guess I was talking louder than I thought, but I was so straight-up on what I was saying, I guess it captured their attention. Kinda like Paul and Silas in prison; people were a captive audience!! Fortunately, my friend didn’t care how or what I was saying as long as it was the truth. Wow. Throughout lunch, she could see the exhaustion in me, but just accepted me as I really was and was so patient and loving during the entire lunch time. She and I have been a support for one another; her multiple cancer surgeries make my experience just a blip! She’s an actress and one of the most beautiful women I’ve ever seen close up. You’d never know she’s had two cancer surgeries on her face! Her latest agent said she’s too pretty to do commercials, but she’s certainly showing them by getting a lot of work, lately. Matter of fact, she’s just been asked to consider being a host for an NBC infomercial! Too pretty, indeed! Anyway, I told her that the piece of my brain that was missing in action is the part I wanted to devote to her news and that I really wanted to hear what was going on in her life, but I just couldn’t make that connection that day. She said she didn’t care; I’ve supported and encouraged her through so much over the months, and I’ve been her mentor and inspiration. And now, it was her turn to return the favor and just let me vent. What a blessing to have her in my life right now. God is so awesome to provide just who I need. – J

9/20/05 Some troubling developments have arisen in the past several days. Julie's tiredness and fuzzy-headedness (which we had previously attributed to her austere diet) has been getting dramatically worse. Even though the nutritionist vastly expanded Julie's diet to head off any side-effects, she has precious little energy and has been having trouble staying awake and mentally focused.

On Sunday, we went to an evening church service with some friends. Julie had been weak all day, but by the time the service ended, she was feeling extremely tired and needed to be taken home right away. By the time we arrived, she could barely keep her eyes open and was so disoriented that I had to physically lead her to bed. The next morning, I asked her how she was feeling, and all she could say was, "Where was my brain?"

Today, after having lunch with a friend, Julie was almost too fuzzy to drive home. When she finally pulled into the garage, I walked her into the house and straight to bed. I took off work to pick up Holly from school and to take her back and forth to an ASB event she was required to attend. Julie slept through all of this and was laying sleepily in bed when we got home at 7:15.

She was too weak and dizzy to get out of bed. (See her posting above) I made something for her to eat and fed her. She was asleep moments later. If she isn't dramatically better in the morning, the on-call doctor I spoke to wants me to take her to the emergency room.

Speaking of doctors, we're due to see Dr. Bosserman on Thursday. It seems there is a new clinical trial protocol that they think may help Julie. We'll see. At the same time, they want Julie to have an MRI of her head to rule out brain cancer as a cause for these new symptoms. Even if that test proves negative, sleepiness and confusion (along with the abdominal bloating Julie has been experiencing) are known symptoms of end-stage liver disease. The only listed symptom we haven't seen is jaundice.

In the meantime, Holly and I have split up Julie's chores and I will be handing the transportation needs.

We still deeply believe in the goodness of God and His power to heal. Please continue to pray! —S

9/19/05 This morning, I got up and searched the Cancer web site for some sort of information on what’s happening with my body right now. I feel like I’m missing a puzzle piece on whether the fatigue, lower body weakness and mind detachment is the result of my liver shutting down or the lack of nutrition that my body needs. I found everything else but couldn’t seem to get a “list” of what I really wanted to know. I shared my lack of findings with Steve, and he said he had stayed up the evening before and found what I was looking for – and those symptoms are consistent with the liver shutting down due to the process of being overrun by the cancer. I just threw myself into his arms and said, “So, I’m really dying, aren’t I?” And we cried together. I told him I just want to continue to be his best friend and partner and supporter, but I can’t fight the facts, if that’s what they are. I know that I’m always positive about this, but that’s the truth, friends. Holly heard the tears and was very sober about it as we drove to school that morning. I just kept up our usual chatter, but also told her the truth about “standing with a fist” and wanting to continue to be significant in her life as long as I could, and keeping up on our morning trips to school was really important for me in that. However, Steve and I have decided it’s just too dangerous for everyone at this point for me to drive; so he’s now going to take over all the pickups and deliveries. That’s actually a huge relief and I’m at peace ‘cause I don’t want to cause problems for anyone else because of a lapse of ability and judgment. It could be tragic! I told him it’s really nice to be living the “life of Reilly” right now…no responsibilities except to focus on my needs and desires at the moment. I sleep when I want; eat when I need to; take care of the details that matter to me; work as I can (I actually am keeping up with my writing because of God’s grace!); I’m even taking care of some laundry and house cleaning as my body allows me and my brain alerts me! Very cool. And Steve decided to work from home today, so I’m even more at peace because he’s answering all phone calls and I get to hear his voice from the other room when I awaken from my naps. It’s very strengthening for my body, and I’m watching the dizziness and bloating subside from actually getting some physical rest and getting my REM dream cycles in, which I’ve really missed. Our brains and body surely need that balance; I’ve never realized it this strongly before!!

Steve also took the initiative today to call one of our oncologists, Tracy, to confirm the information about the end-stage liver cancer he had gathered. To the best of her knowledge, what Steve discovered is true, and she wants to support us in the process. So, she suggested that we do three things: one, she scheduled an appointment for us to meet with them this Thursday, and she scheduled an MRI for me to confirm whether the cancer has spread to my brain, and that’s why it’s just functioning at such a bizarre level. Second, she wants me to start getting more protein into my diet to combat the physical weakness and mental apathy. This goes against the holistic diet I’m on, and I’m loathe to discontinue it. And Steve respects my wishes, but he wants me to adjust it, anyway. He even thinks there's a remote chance that I'm allergic to what’s in the tea I drink! That is a possibility as they say some do have a reaction; I actually hadn’t considered that before. However, I’m adamant about continuing it since Dr. Yeh feels it’s really the most important element of my cleansing and detox treatment. So, Steve reluctantly agreed and I’m still forcing it down three times a day. It’s bitter, but it’s my special mixture and I’m trusting it! Third, she suggests we consider trying to become part of a new clinical trial of a protocol (a combination of drugs) which make the cancer cells more receptive to the treatment. I think that chemo name is Gemzar, but I won’t be sure until we see the oncologist on Thursday. Steve will be with me for this, so I’m sure he’ll write everything down so I can remember it! The idea is that we take the protocol drug for a week, then have another MRI, then start the chemo and see what happens to the cancer. The truth is I really don’t care if the cancer has spread to my brain or not. I don’t care if the cancer is spreading in my liver. I don’t care if the cancer is in my bone or not. It doesn’t matter what I feel; it’s what I know! And I know that my God has healed me completely!! I can’t wait for His timing on this, and we have so many people standing with us believing for that same healing. Now, I’m wrestling with the idea that what we’re going to do with the oncologist is against the healing Word and power and promises of God, but I’m going ahead with this out of obedience to my beloved partner who wants so much to care for me, and the concern and compassion of my oncologist who wants the same. Let’s see what happens next! - J

9/18/05 Where was my brain today? I felt like I had two; one focused on the day-to-day stuff I needed to do, and another off in “la-la” land, totally tippy and woozy. At church, Holly and her friend caught me “napping” during the message. However, by closing my eyes, I can actually concentrate better on what’s being said. And as we’ve been studying the Old Testament, I’m lasered in on what’s being said clearly as I’ve pre-read all the material. It still continues to be a blessing to share this reading with Steve each Sunday morning, seeing his interest in the our pastor's insightful teaching. It’s hard to believe that people had such direct connections with God and yet chose to be so cavalier about their attitude toward Him and His continued attempts to covenant with them and keep His promises. The point of this study is to reveal the real character of God through the ages. Man – is it ever powerful to see the Lord’s constant, committed attempts to do that, starting over and over again with Adam, then Noah, then Abram and Sarai (later Abraham and Sarah). And to see the final new covenant that Jesus made with us through His blood and body, broken for us. The pastor made the point this morning that, when we come to the communion table, we really don’t fully understand the power of that covenant, either. We are the ones who are cavalier about that, and it’s time to stop that practice.

That evening, we attended a radical, cool service in Azusa. Again, my brain was in two pieces: one totally focused on the very rapidly paced movement of the service: the worship, the teaching, the committed love story they shared about a couple married many years in which the wife has suffered a series of strokes but the husband continues to stand by her each day, believing for her complete healing from the third, most devastating one. And it’s working! Their testimony speaks volumes to all those around them. And it surely spoke to Steve and I as he takes care of me each day. However, by the end of the service, I couldn’t wait to leave and come home to bed. My body was totally wasted, and I had to be helped into the car. It was a struggle to stay awake, and yet when I got home, I felt I couldn’t go to bed until I’d accomplished a list of things. My first intention was to just crawl into bed and take a nap to rest up, but as the time slipped away, I knew I still had to eat and take meds before dozing off. And I got stuck on trying to send an email for 4 hours. 4 hours!! That should indicate just how warped my thinking was at that point!! Well, I did finally get that off, but my family had to pour me into bed about 11 p.m., and it wasn’t a pretty picture. My feet were all swollen and my stomach was bulging and I felt like I was sliding off the bed, so I had to prop myself against the headboard to not feel like I was going to roll off on the floor. This just can’t go on!! - J


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